Parental stress and coping in families with fragile X boys

Abstract

The aim of this study was to identify the specific interactions between child characteristics, parental stress and coping, as well as intervening variables in families with a child with a fragile X syndrome (FXS). 49 boys with a FXS aged 5;7 to 16;10 years (x = 8.6) and a control group of 16 boys with tuberous sclerosis (TSC) aged 5;0 to 17;7 (x = 9.5) were recruited mainly through parental support groups. They were examined regarding: intelligence, comorbid psychopathology, social support of the family, parental stress, and coping. The mean IQ equivalents for the FXS (and the TSC patients) were between 46.1 and 48.8 (58.9 and 60.8) with a relatively homogeneous profile. The psychiatric comorbidity was higher for the FXS patients: 18.4% (25%) had no, 46.7% (25%) multiple diagnoses (DSM-IV), 89.8% (68.8%) had a CBCL (Child Behavior Checklist) total score in the clinical and borderline range. Families with an FXS child had a significantly higher total stress level and a lower degree of resources than the those with a TSC child (QRS; p < .01), especially regarding the ‘child characteristics’ (p < .001) and the ‘physical incapacitation’ (p < .01) scales. The higher stress in the FXS parents was significantly influenced by the higher rate of psychiatric diagnoses of the FXS children, but not by the general level of intelligence. Social support was high in both groups and inversely correlated with stress. Coping abilities did not differ between the two groups. The higher the stress was perceived in the FXS families, the less parents were able to cope actively and resorted to more passive forms of coping.In conclusion, parents of FXS boys have high level of social support and coping abilities. They experience significantly more stress, which is influenced by the child's behavioral problems. This stress negatively affects active parental coping.